Stigma of epilepsy . . .

Posted: November 18, 2011 in Epilepsy
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November is Epilepsy Awareness Month.

In 2002 I found our 3 ½ year old son having a seizure and not breathing. Then we were off to the Emergency Room. This is how our struggle with Epilepsy began. And since then we have seen many neurologists, endured numerous neurological tests, been on multiple types of seizure medications, had surgery to implant the Vagal Nerve Stimulator device to prevent or reduce the intensity of his seizures.  And now my son still has seizures and is facing serious issues at school as a result of the seizures and the learning disabilities that go along with the disease. 

Unfortunately this is a common scenario for many parents. Epilepsy has little warning. Suddenly a perfectly healthy child is stricken with seizures.  My wish is for a national effort to spread understanding and support for those with this heartbreaking disease and their families.  Before you presume that Epilepsy has not touched your life please consider this:

  • As many as 1 in 100 people have a form of Epilepsy
  • Epilepsy is a neurological disorder
  • Epilepsy effects all ages, races, and countries equally
  • Epilepsy can be caused by strokes, brain trauma, brain tumors or scarring, and infections like meningitis or encephalitis.
  • But more often there will be no clear cause or reason for the patient to be afflicted.

Most people are afraid to talk about their disease due to the stigma of epilepsy.  When most think of a seizure they picture a “Grand Mal” type event. The terminology grand mal is not even used any more.  Often a person with Epilepsy will suffer from other types of seizures. They can range from brief absence seizues which are moments of “blanking out.” Or they could have drop seizures that cause a person to fall violently to the ground. Or they could have myoclonic seizures which are quick muscle jerks.

In most cases epilepsy can be controlled with appropriate medications. When medications fail some will have to resort to surgery. Specially designed diets have also been successful in treating difficult cases.

 Despite how advanced the world has become the stigma of epilepsy still exists. People still have old world ideas about epilepsy. It is my hope that when you think of epilepsy you can imagine the person, not the disease. Let’s change the face of epilepsy.  My son is a  child who struggles every day to overcome a disease that can rob him of his basic ability to learn and thrive. 

Please visit http://epilepsyfoundation.org/ for more information and provide support.

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Comments
  1. WI Snowflake says:

    The VNS got rid of my son’s worst seizures. We coming up to the time that the battery is going to die. We are making the decision whether to have a new one put in. He has little seizures once in a while, but nothing like it was in the beginning. You are right, we have a long way to go. Keep the faith!

  2. Thank you for your post to help raise epilepsy awareness. I especially like this line: “…when you think of epilepsy you can imagine the person, not the disease”. It is very hard for so many people to separate these two. I hope no one ever lets epilepsy define their lives.

    How has the VNS been for your son? I am grateful for all the treatment options that are now available. So many have made it easier to live with seizures that previous medication could not control. We, as an epilepsy community, still have a long way to go but we are making progress.